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Wednesday, 12 December 2018

The pressure of inclusion in Christmas shows

Today was Jane's Christmas show. She's in Year 1 now and I've settled into a relaxed routine. Jane beams with pride at every song, action and line. She waves at me when she thinks no one is looking. Secretly I know she's eyeing up the lead rolls the Year 2 kids get. It's a stark contrast to what I'm used to. Jane's siblings are autistic and having kids with autism in a Christmas show is far more nerve wrecking.
There is a great pressure for kids with special educational needs to be included in as much of mainstream life as possible. Truth is not all these activities suit all kids. Not all kids suit mainstream school at all.

Anthony survived helping with props during the Yr6 performance. He was helped by a teacher and another child and did well. I haven't been to David's Christmas activity this year. Last year, I got a call to say, he could be in the Christmas sing along. I'd like to say it went well and that I remember watching him cope. But I can't. All I can remember watching is tears as they dripped into my Costa coffee. Well that, and other people's kids singing in a hall.

David is in a specialist autism unit attached to a regular school. This means most days he spends most of school learning in his unit and then some small part of the day, usually in the afternoon, being included in his mainstream class. Last year this has coincided with the mainstream Christmas show rehearsals and David was joining in.

"There are a couple of showings next week," Jerry, his Applied Behaviour Analyst , had said on the phone.

After going through when would work, as some showings were with or without siblings etc, the Tuesday showing seemed the best bet.

"He's got a choice of costumes; he can be a reindeer, a snowman, an elf or Father Christmas. But I don't know if we will be able to get him into costume, and I don't know if he will join in the actions or try to make any sounds," he had explained apologetically.

I remember giggling to myself. "I sometimes have difficulty getting David into regular clothes. Goodness knows what he would make of a daft looking, probably very uncomfortable costume thrust onto him at the last minute." It's true, he still doesn't even bother with mufti days, costumes is one step to far. I'd still be more concerned about him trying to get other kids to take their costumes off. After all they are at school so they should be wearing school uniform as far as David is concerned.

"Jerry," I said in a voice so chilled you'd imagine as I was still in my PJs slouched on the sofa (ohh, that sounds nice), "Don't worry about it."

"David nor you need the extra stress of worrying about costumes or me. Just go with what works for him and if he doesn't say anything or do anything it's fine. If he needs to leave it's absolutely fine. Infact I'm not making a costume at all, that way there is no pressure. David won't think twice about wearing a costume, I'll put a white T-shirt in his bag in case but no really, don't worry about it." I said.

Jerry was obviously relieved. "I'm so glad you've said that."

And it occurred to me that maybe the unit are put under a lot of pressure to include the kids into the mainstream activities. Obviously it's what they are there for. To assist with integration - both ways. But I've always felt it should be at the pace for the child and things like Christmas performances are preset with perils. Things are different, people are different, it's often in a different place. All this can be difficult for autistic children.

So on that Tuesday at 2.15pm, I nonchalantly strolled with other nearly late parents into the 2nd Hall and tried to sit as far at the back as possible. That way I'd hopefully be out of sight and not distract David. Despite my cool attitude I remember feeling a little leap in my tummy as the kids started to file into the room and sat on the floor either side of the stage. I tried not to look so I wouldn't catch David's eye when he came into the room. Then we were asked to not take photos and the singing started.

I had looked about.

About half way through the second song, I'd felt I'd looked everywhere and couldn't see David anywhere. While the children were singing, one little two little three little snowmen, I was counting one and two and three teachers. There weren't enough teachers to have David in the room, and no one I recognised from his unit.

Let me tell you. There is something incredibly down and pointless in watching a Christmas show without your child in it. While everyone oohs and ahhs and you realise, there is nothing for you in this room. I can still feel it.

I doubled checked the room again and then began to wonder if I'd got the right day, the right hall?
And eventually, when would it be OK to duck out the back.. pretty shortly after I'd had that thought is the answer.

I checked at reception and they had called down to the unit. Apparently there had been some incident in the mainstream classroom before the show, and Jerry, quite rightly, had decided it would be better to try another day. He apologised for not letting me know, but would the same time tomorrow be OK?

Of course it would. Whatever works for David. No problem at all.

So I'd looked at my watch and as it was 2.45pm, there hadn't been enough time to go home before collecting the kids. I'd headed to Costa, and 15 minutes later I was sitting listening to a 'dink dink' that were tears dripping onto the white plastic lid on my take away festive cup.

Why had I been so upset? Why did I have an ache in my gut?

David was not sad. He was blissfully unaware of anything being different or wrong. Jerry did exactly what he should have done. What was wrong with me?

Perhaps it was that pressure for inclusion that Jerry portrayed. I only want what's best for David, as I do all my kids. And that's whatever he needs, when he needs it so he can grow and have a life that he wants. And that doesn't have to involve ever being in a Christmas show or anything else if it doesn't work for him. But maybe I'd thought it would, and maybe that's why I'd felt disappointed. Whether I like it or not, even if I create no pressure on inclusion for David, I still feel it for him. Daft really.

Good news though, after drying my eyes with a scratchy napkin and wiping the salty lid of my coffee, I headed to school for collection. I picked up a gloriously cheerful boy and hugged him tightly. He didn't end up in the show the next day either. I was OK by then.

I don't know if David will ever be able to be a prop assistant like his older brother. He won't be eyeing up the star spot like his older sister, but whatever happens, I'm privileged that he will always play a lead role in my life and will help him be included when it's right for him.

12 comments:

It's hard these things that (for want of better words) magnify the difference for what is considered 'normal' experience for other parents (watching their kid in the concert). However, I do think it's better to try and fail than not try. One boy with ASD in my daughters class didn't go in the first concert, just stood on stage at the side but didn't dance in the second and this year, merrily danced in a pretty lead role. So, that to me in itself is the lesson in trying. It may be too much one year but three years later, they may decide it's their 'thing'. As hard as it is for us as parents, any win is worth the effort

going to echo what Neil said. I've been blogging and reading other people's blogs for almost four years now and its almost embarrassing how much I've learned about what other people go through. Embarrassing because there is so much that we never think about in our own little bubbles #triumphanttales

Christmas must be a difficult time of year as so many things are different and normal routines change. I agree with you that inclusion in mainstream activities should be at each child's pace, if and when it's best for them. #kcacols

My son is undiagnosed autistic (or is he? he's been tested) and I tried so hard for him have some part in the reception show at Christmas. Could he take photo's? Could he welcome guests? I volunteered to stand with him and take him out if necessary. Needless to say I was almost in tears as I collected him before the show started with the other parents looking on. Really flipping hard!

What is Autism?It's so much I couldn't possibly try and explain. For us it's wonderful and heart-breaking. Joyous and truthful. But as far as diagnosis is concerned, why not have a look at the National Autistic Society for their definition of Autism.

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